It’s a roller coaster baby…

So let me tell you about yesterday…

First of all, I’m a store manager for retail. I work at a good company (I’m not sure I should say because who knows who’s watching!) that has been very understanding about Katie-Anne. I was moved to a new store a few months ago because it was changing into a ‘Store of the Future”. This basically means it’s a huge remodel, while the store stays open, and when it’s done it will be beautiful and amazing. Seriously, they are beautiful. I’m very lucky to have been given this opportunity. However, with it, comes a LOT of pressure. All corporate eyes are on this whole project and it is very intense with a lot of corporate involvement. I always wonder why they gave me the store because they have always known my daughter had cancer, a very aggressive kind. I will say, though, that I have never used it as an excuse to get out of work. I just don’t want to be that person. As the leader, it is my job to be the best example I can be.  I think that is why they gave me the job still knowing that she was so sick.

I had to reschedule Pooters doctors appointment to Friday (yesterday) because Dr. Watt needed more time, which had me freaked out, but what can you do? I found out Tuesday while at a district meeting and told my manager that I would have to leave at 12pm on the day of his and other corporate visitors, and without blinking an eye he said sure. Fast forward to yesterday. I’m at work at 6am. Lots of crazy stuff going on. I’m a hot mess, like really…a hot mess. There is so much to get done that I can’t even type it all, yet all these corporate guys come in, work really hard to get everything done with me that they needed to, tease me mercilessly in between, so that I can get out by noon to take Katie-Anne to see Dr.Watt. I’m just lucky because in previous work lives, that would not have been the case.

I had Celina drop off Katie-Anne at my work, everyone got a quick visit, which I wanted because I want them to know her. Then off to the hospital we go. It got up to 104 degrees yesterday. I’m pretty sure my skin was melting off of me…or I’m just overweight (which is actually the truth lol). We get to the hospital, and roll into valet (I haven’t paid for valet in over a year because the guys there are amazing and I love them in a totally platonic appropriate way) singing at the top of our lungs the Moana soundtrack. We go to check-in singing Moana. We ride the elevator singing Moana. We get off the elevator and into clinic singing Moana. We were singing loud and proud and I could not care less what people thought of us…though everyone was smiling and laughing. You see, she loves to sing with me, it’s our thing. She asks for Mommy’s songs (I’m not sure why they are mine, but I sure wish I was getting royalties from them!), we roll the window down, and I really go for it. I mean I do the whole car singing, crazy lady, belting out the words…and she loves it, I mean absolutely loves it. She sings with me and when she hits a verse she knows…watch out! I’ve had people watching me before in the car at lights, but I don’t even care. Truth is…I want these memories with her. I didn’t have anything like them. I -want- her to look back and tell her kids that she loved when her mom sang in the car with her, that she remembers the wind on her face, and the joy in our hearts.

Back to Dr.Watt. We get our labs and head to room 14. Which, let’s be honest, I already don’t like because it’s an even number. We aren’t in there for very long when Dr. Watt comes in with a huge stack of papers and I’m thinking it permission paperwork. She sits down and she looked tired, not that she still wasn’t gorgeous, but probably one of the first times that I thought she looked like she needed a break. I’m getting nervous at this point because she is always smiling and happy, or calm and smiling if it’s bad news, but she looked kinda beat down. She proceeds to tell me all of the results from the tests again which is good but has me a little confused because we had already been over it, you know? Then she takes this big pause and says, “We aren’t going to do radiation”. What?! Why?! What’s wrong?! All that goes through my head in a split second. She basically told me that the radiation team said that if we wanted to radiate because those are original tumor sites that they could do it, but if we wanted to radiate because it was a new spot on mIBG that they didn’t see the need for it. So right about here, my head is tilted like a yorkipoo. Then she goes on to tell me that they think the mIBG that is lighting up on the scans (but not on PET) are matured spots they have turned into ganglionneuroblastoma (spell check won’t even touch this one btw). They think the spots that are lighting up on the PET scans are just metabolic activity. Basically they think where they took out her ribs, they are growing and knitting with the pig collagen and they is why it is lighting up on the PET. Dr. Watt told me that she wanted the extra time to get everyone she could to look at all of the scans so that she could get multiple opinions about them.  She kinda takes a deep breath and then tells me that they don’t think her cancer is active right now. I just blink kind stupidly at her. Wait what?!? Not active? She tells me that she isn’t NED (No evidence of disease) but she’s as close to it as she can get. She still has disease but they believe that it isn’t active and that’s why she needed more time so that she could get more eyes on the results to confirm what they thought.

So I bet you thought that I stood up and did  sounding rendition of “Hello Dolly” jazz style…but you’d be wrong. The thing is, and Dr. Watt even warned me, is that in two weeks when we scan for Sloan, she could have 5 new spots. That’s just how Neuroblastoma is. That is why Dallas doesn’t have a bell because they are so superstitious about it ( which btw I totally get and support so no bell ringing around here man). So I’m sitting there in my seat with Katie-Anne watching Kinder egg videos and wondering what the heck is going on. Three weeks ago I thought her neuroblastoma was growing and I was crying in my car thinking I was going to lose her. Now, I’m sitting in the clinic afraid to be excited about her not having active disease. It’s like a rollercoaster…one week you are down and the next week you are up. You can’t even blame the doctors or the people who read the reports, because until you see everything together, you can’t get the whole picture. Plus, if I’m completely honest, I’m so grateful that Dr. Watt took the time to put it all together instead of just cranking out a plan all willy nilly.

So what do we do now you ask? We are doing low dose ICE because they just want to give her a maintenance dose and get her to Sloan. We have to redo all of the imaging which is fine with me because then we can see if the results all hold up. Maybe then, just maybe, I can start to be excited just a little. I asked Dr. Watt if she is happy, was she optimistic? She said yes. I asked if she is “maybe almost going to be okay”. That phrase seemed to work for us. Dr.Watt asked Katie-Anne if she could have a hug. It’s taken Katie-Anne awhile to let Dr. Watt hug her…she’s a tough sale, my Pooters, but she went to her and let her pull her on her lap. Dr.Watt wrapped her arms around her and very softly said, “I’ve had a rough week this week. I’m glad I got to see you today and give you good news.” then she kissed her little bald head…and I almost lost it. I think we all know what she means when she says she’s had a bad week…and for her to be happy about holding my baby and giving us good news…well, lets just say I was touched.

This journey we are on seems like one big cruel roller coaster, but when you meet doctors like Dr.Watt and you are a better person for knowing them, even if it is just superficially, it almost makes it better…almost. That’s just how it is when cancer happens.

 

Dreams of the Young

You know what I love to watch on TV? Dance shows, talent shows, and competitions. I love watching all the people trying to reach their dreams. I love watching the cheesy back stories that are made to tug at your heart-strings. Most of all though, I love when they have their mother or father on, waiting in the wings…cheering them on. It never fails that I will get a little misty eyed when watching the parents cheer on little Suzy’s dance performance or little Tommy’s singing performance. It never fails that they’ve had to overcome some great hurdle to be there that day, or that place in their lives. My mind always seems to drift to Katie-Anne in these moments. I think that I’m like every parent in the regards that I want my child to do great things. When I was flag captain in band, I wanted to be the best. I wanted to have my parents out there to see what I could do because I honestly thought I was pretty damn good (at the time). What most of the kids and teachers didn’t know was… that was all I had growing up.

I grew up in a beautiful place of the world named Fort Walton Beach, Florida. (850 in the house!!!) White sandy beaches, amazing shopping, and so much to do as a child. That is, unless, you were one of the many that couldn’t for a number of reasons. Too poor, bullied, behind in grades, and often, through no fault of your own, you become the outsider. I had a few friends, some closer that others, but non knew my dark secret. I was being raised by my grandparents, well most people knew this but not really why. I never told anyone because I was ashamed. My mother was a very mean, very abusive drinker that didn’t hesitate to take her problems, real or imagined out on me at any given moment. Most ways it was very physical, some more mental. I could tell you stories for days that you would not believe…but not today. Getting to my point, when I returned to live with Memaw and Papa I was supposed to going into my senior year. I had been tested and put into gifted classes in my 6th grade (deficient gifted btw whatever that means lol). In fact though, I had failed the 9th grade three times while living in Texas. So the school board got together with my grandparents to try to save me. They took all of my 9th grade years and  what I passed in each year and decided to put me in as a junior instead of a freshman again. I had to take summer school and correspondence courses as well as only one elective, which was band. I was a good flag girl. I could do a double double and almost a triple double (toss flag, it spins 3 times in the air while I spin 2 times under it and then catch it in a blaze of triumph!). I would go to practice everyday excited to learn more but afraid I wouldn’t be good enough. I was on the big side you see. I was seen to some as a bitch, to others as stand offish. I was awkward and always afraid of getting in trouble. When our instructor would yell at me for doing something wrong…I just wanted to crawl into a hole and cry. I think I came across like I did because I had no concept, after being with my mother as a child and preteen, on how to treat people, or how to react normally to certain situations . I didn’t want to get made fun of, laughed at, or a number of things that happens to those that get bullied. The other side to this is…that I didn’t let people in. I was standoffish because I couldn’t take the chance that I would get hurt again. I was so lonely. But not lonely enough to let anyone really in… or leave and go back to my mother.

Despite all this, I did get to be flag captain in the winter guard. I struggled to make it though every practice, ever run through, ever exercise we had to do to be part of the show… and I did it all with Sick Sinus Syndrome. Oh what is Sick Sinus Syndrome you may ask? It is where my resting heart rate is between 20-25bpm. Without a pacemaker, like I have now, I was literally trying to just get enough oxygen to breath. I was told I was out of shape, ate too much, and because I was a charity case because my grandparents couldn’t afford to take me or enough money for the trips to all the extra places the band went, there were a few times that I was left behind. Imagine if they had known then that my resting blood pressure was 40/60 give or take a few.

My grandparents came to one show the whole two years. I don’t blame them, they were old and my Papa still worked so he was too tired to go. Every single show though, I would always look around, in case someone was there for just me…to cheer me on. There never was though… I decided early on then that if I had kids that I would do everything differently. I would be present at every competition, every dance recital, every championship chess game. Whatever it was, I would be there. I would be their face in the crowd. I would be on the sidelines cheering them on. You know the one I mean.

After I had my own children, I would always day-dream about what instrument they would choose to play, what style to dance, what to song sing…whatever it was, I would be there hopefully embarrassing them in the best way possible. Being the mother in the curtains waiting for her littles to come running into her arms and her tear streaked face.

But now, I don’t know how much of that dream can come true. Don’t get me wrong, she’s strong as all hell, but she’s missing five, very much needed, ribs on her right side that will keep her from doing any kind of contact sports. She can swim but not competitively due to how her clavicle is now attached to her sternum (by a wire). Dance maybe could be a possibility if its contemporary, but never with a male partner…she’d have to be solo.

I know there are tons she will be able to do, academically for sure. She already has a huge interest in science, which I TOTALLY support! As a grown up I want to be a Planetary Volcanologist ( No I am not grown up, nor a Planetary Vulcanologist…shout out Office Depot lol). I want to study volcanos on other planets. I’m not sure if there is some wildly crazy science competition that she could be in, maybe a science fair type thing. I’d be there though, with my nerdiest shirt on, tears running down my face, and running down the aisles screaming, “That’s my baby! She just learned how to turn M&M  brownies into a biodegradable form of energy for space travel! That’s my baby!” She’ll need to learn to read first though, which she has absolutely no interest in by the way. But hey, that’s how it is when cancer happens…

 

 

And so it begins…

I was going to do this whole big intro to the blog last night when I fell asleep mid brainstorming (thanks Ambien!). When I woke up this morning, I started to think of all the things we had going on today and I decided to just start with that. So here we go.

Today we are moving Mimi’s fridge. She’s getting a new one and we are getting her tiny one and putting it in our garage. There’s a valid reason for an extra fridge in the garage. One, ours is kinda small even though it’s pretty new. We couldn’t get a big mamajama (is that even how it’s spelled?) fridge with the space available. Also, Katie-Anne requires a lot of space for her medicines. Seriously, we have about 22 different medicines in the fridge and more in the cabinets. So Mimi said we could have her old one. Perfect!

We are actually on our way there. We stopped at What-a-Burger to get hash browns and uncut biscuits. Katie-Anne has seriously eaten about 12 hash browns and a biscuit. Before you start on me about it not being healthy, please understand that when your child has cancer, they get whatever they want to eat. Our goal is to keep Pooters over 16kg which is 35.27 pounds. Right now she was 16.60 kg at last appointment which is 36.60 lbs. The hospital does kilograms so I’m totally ready to convert to the metric system anytime now. She has been as low as 32 lbs and that was just a couple of months ago. Our doctor says that we can address nutrition later on, but right now, calories and weight are more important. So what does that mean? Bring on the carbs baby!

After operation #MoveMimi’sFridge, we are going to go see Cars3 with the Jason, Holly, and Gavin. Arron’s brother, sister-in-law, and Katie-Anne’s cousin. Katie-Anne loves Gavin so she totally excited about this adventure. We’ll see if she actually sits through the movie though. She has this thing about movies. She’s totally afraid of them, like running from the room crying afraid. She’s never seen anything scary. I honestly think it was “Finding Nemo” that did it, the shark scene. She did make it through half of “Moana” and “Baby Boss” so we’ll see. We are also going to “tailgate” before the movie. Holly is getting the kids some goodie bags and stuff. Gavin is super excited about Cars3, like…really excited.

Pool party to follow. So I’m super excited about my fat butt getting in the pool in front of Aaron’s super skinny beautiful family and their super preppy beautiful friends…not. The last thing I want to do is rock my size 16 butt in front of everything. Ugh. If I could insert slightly green vomit face here I would. Guess what though? I will because Katie-Anne loves swimming above all other activities. So sorry to the rest of the party lol. Everyone there is perfectly nice but you know how it is when you hate your body.

Then home to clean the house. This is my day off this week so I have a ton of stuff to get done at the house, but I won’t get it all done of course. Sometimes I just feel like I don’t get a true day off ever. I work from 6a-5p five days (sometimes 6) a week and then my days off are filled with chores, activities, and appointments. I have about 1 million loads of laundry to do too. I absolutely hate laundry more than the scum off of satan’s toe nails, providing satan has toe nails and not hooves. Also, if you have children you can sympathize with this one…my kids are tiny tornadoes. Especially Cooper, my two year old. He also has no regard for his safety what-so-ever…like none…zip…zilch. So between him doing dive bombs behind my back on the couch and dumping out his toys everywhere, my house looks like a hot mess with a nice coating of cat hair and golden Oreo cookie crumbs everywhere.

I have a full day ahead of me and I am half excited about it, and half wanting to crawl into a hole somewhere. I am tired…bone tired. I’ll get through though. Hopefully, with minimal sass, snark, and saltiness…but I doubt it.

But hey, that’s just how it is when cancer happens…